It’s Rare Disease Day 2017 on February 28 – the day during which as many people as possible
who are affected by rare diseases in any way aim to increase awareness with policy makers and the public of rare diseases and their impact on the lives
of patients and their families.
You can do this by sharing your photos, videos and thoughts with us on our TSA Facebook page and
our TSA Twitter feed. And please remember to use the hashtag #RareDiseaseDay2017 whenever you
post anything to our page or feed.
If you would like to attend a regional event and have the opportunity to meet with policy makers and influencers in your area here are details of the events
for Wales, Scotland, England and Northern Ireland. If you do hope to go to one of these events, we’d be glad if you could let your local TSA Adviser
know too please.
Rare Disease Day event at the Welsh Senedd on Tuesday, February
14 – FINISHED
Rare Disease Day event at the Scottish Parliament, Holyrood, Edinburgh on
Wednesday March 1 TOMORROW
Rare Disease Day at Westminster on Tuesday, February
28 TODAY
International Rare Disease Day 2017 Joint North South Conference at Kilmainham, Dublin, Republic of Ireland on
Tuesday, February 28 TODAY
You can watch the 2017 campaign video by @rarediseaseday.org here
And you can watch the TSA’s video about research into TSC at Cardiff University here
There are also three research conferences taking place which you may be interested in find out more about:
The British Paediatric Surveillance Unit, part of the Royal College of Paediatrics and Child Health,
is to hold its second conference exploring childhood rare diseases on Monday, February
27, at Birmingham Children’s Hospital,
Steelhouse Lane, Birmingham B4 6NH. The conference will explore the theme ‘From bench to bedside: New treatments for children with rare disease’
and will focus on the development of new treatments in paediatrics, from inception to delivery.
Findacure is holding its 2017 Scientific Conference on Drug Repurposing for Rare Diseases at
the Royal College of Nursing on 28th February, to mark Rare Disease Day 2017.
And the Rare Disease Day Cambridge Lecture takes place on Tuesday, February 28 from 6pm to 9pm at Cambridge Judge Business School and is jointly hosted by NIHR Rare Diseases Translational Research
Collaboration Cambridge Rare Disease Network.